We had our annual visit to Mayo in Rochester, to see Dr. Boeve. We were scheduled for 3 days and I opted to commute. It is good to sleep in our own bed and get the trash to the curb appropriately take care of a little work -- but boy, is it hard to get Coy up in time to be at an appointment 80 miles away by 9:00 am!

The first day included about 3 hours of testing for Coy, and an interview for me. Coy said he did poorly on the tests. I asked him if that bothered him. No, he said, "I expected it." I do think he has accepted his limitations.

The next day we saw Dr Boeve for at least an hour. He said Coy's test results were about the same as last year. The in-office tests of drawing a cube and setting the hands of a clock were definitely not as good as last year.

Coy described all the changes (declines) in the last year. I added details. Boeve asked the same question he asked at our first visit. Which symptoms bothered us most? Where should we start the treatments? Coy said what bothered him most was lack of alertness during the day. I was OK with that. Boeve agreed but said "The first thing I am going to treat is the hiccups!" Coy had hiccuped the entire time in the office. Thorazine is the most effective treatment for hiccups, but obviously not suitable for LBDers, Baclofen is second choice, but hasn't worked for Coy in the last couple of years, and so now we are trying Gabapentin. Cross your fingers. It makes sense to treat this symptom first, because the trial will be short and not delay the other treatments much, and because hiccupping all night probably doesn't contribute to feeling well rested in the morning!

Next, we will be switching from Provigil to Nuvigil. Dr. Boeve has just completed this study: http://clinicaltrials.gov/ct2/show/study/NCT01023672 Results aren't posted yet, but he says that he was very impressed with the drug. It was a small study of 20 patients for 12 weeks, with 3 of the patients formerly on Provigil. He is presenting this at a conference in Ireland next month -- he said that such a small study was chosen shows that there is really little research going on specifically in LBD right now.

After we incorporate Nuvigil, the next change will be to go on the Neupro Patch.

Coy complained of his left knee buckling on him unexpectedly, causing falls. Boeve said "that can be treated" and wrote out a presciption for PT. We have the first session in 2 weeks. Coy was very encouraged about this.

He also wrote out a prescription for massage therapy. We've been doing that anyway, but now it is officially medicinal and insurance may cover it.

I really wasn't expecting much in the way of treatment plan changes this visit. Coy is declining and I thought we'd just have to accept that. Ha! Dr. Bradley Boeve does not give up trying easily.

The third day was devoted to a DaT Scan. This is primarily for research purposes, although Dr. Boeve says they've adjusted treated for about a third of the patients who've had the scans so far. The hope is that this scan can identify better treatment plans earlier, and also serve as the biomarker for measuring the effectiveness of various treatments in trials. I should get the results and talk to Boeve about them in a few days.

He approved of our travel plans (cruising around Lake Michigan) and asked about Coy's daily activities. He said that there is mounting evidence that keeping active may be the most effective treatment for LBD -- in some cases more impressive that drugs.

Another tidbit I learned is that the HABIT program for MCI patients and their caregivers appears to be very promising, and they are working on a similar program for LBD (or maybe specifically DLB -- that part didn't register). Mayo is also working on a manual with a subtitle something like "how to partner with your physician to treat your Lewy Body Dementia." I asked if there was a chapter on how to find a physician who will partner with you, and he grimaced and shook his head. I think that the continuing lack of awareness and enthusiasm in the medical community is an ongoing disappointment to him.

Not really funny but certainly an issue!

Glad to hear that Coy is willing to accept his decline. Denial can make everything a lot more difficult. Hope you have a wonderful trip!

jeanne.

thank you so much for sharing the info... some of the news sounds promising and some sad..... the lack of awareness and enthusiasm is the most sad and disappointing....

the promising, the earlier awareness... if only, that could help others...

jeanne a few things you mentioned .. the leg/ knee giving out, is something we have been dealing with for over a year.. first blamed on statins, then muscle cramps, then parkinsonisms, now possible nueropothy .. but no ideas for help in fixing or helping to strengthen... can you share what you have learned.. cause and help.. anything???

the second is, denial and acceptance.. any thoughts or ideas on how to get from the first to the second.. i think life would be a bit easier if we were both on the same page, working together... any suggestions would sure be helpful.. thank you

coy sounds as though he is doing well and holding his own.. you are a wonderful caregiver... it sounds like you got a lot out of this...

sure wish mayo was closer.. would love to be able to take part ..

thanks again,cindi

The RX just says "PT for parkinsonism, left knee buckling." We start the PT on the 30th. The rehab place we've used before and is close to our home said they could handle this just fine, but recommended another place if we wanted a full range of Parkinson treatment. I declined that at this time, but said we'd see what the local PT person thought. I'll let you know how it goes.

Coy has always known he has dementia and it is not curable. He has not always accepted his limitations graciously. In a way that is positive. Up through last year he was bowling and his goal with PT is to be able to go back to it. He didn't know why I wouldn't let him shovel or get up on ladders, etc. He'd argue that he could do something that I didn't think was safe. But recently he's become more accepting of his limitations, sometimes pointing them out himself and asking for my help. I don't know how to move someone it that direction. Even when he'd argue about what he thought he could do he has always known that Lewy was the enemy and that we had to fight him together. I think that has made my role less of an adversarial one, and I'm grateful. Lewy is a problem for both of us and we don't blame each other. I think flat out denial would be more difficult to deal with.

I take gabapentin for chemo-induced neuropathy and restless legs syndrome. It has helped a little with the former,but pretty much controls the latter. I havent experienced any of the side effects; hope Coy has equally good results with it.
There's no way to know for sure, but I believe my hb's refusal to admit he had dementia contributed to his rapid decline. A year ago he was still well enough to travel and enjoy it. Today he talks mainly gibberish, is incontinent, and doesn't know where he is. I believe the mental energy he used denying his condition, staying in "show time", and fighting his treatment sapped his cognition. He had major paranoia, and the meds to treat that do take their toll as well. I don't regret using them, he was in a constant state of alert, ducking under the windows and whispering inside his own house. Before we began treatment he felt in a state of siege most of the time. You have to pick your battles...
Thanks for keeping us updated. And I bet everyone was groaning at the thought of trying to get a LO with Lewy to a 9 am appt 90 miles away. Good job!

thanks jeanne..
ill be interested in hearing how the pt goes....hope it helps coy!!! ill ask the doc the next time ,on getting some for hubby and strengthening the leg... he has pains in one leg all the time.. especially if he uses it a lot.. he loves to just piddle and rake and do things in the yard.. but we have two acres and its hilly and its usually after spending time walking around, up and down the incline etc.. that the pains are vicious... so maybe the pt would help that too..
thanks for the info..

cindi

Great info, Jeanne. Thanks for sharing!
What will the Neupro Patch do for Coy?
Pat